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Fear of swallowing/Endoscopy this week
Hi,
Just before Christmas I chipped the crown on my front tooth and because I'm very hyper aware of anything to do with my body I felt like my swallowing wasn't right at times. My anxiety has been horrendous this last year which has resulted in me having to leave my job because I was struggling to leave the house, especially on my own. Anyway back to the swallowing. Me and my partner went for a meal on New Years Eve and the restaurant was very busy and I felt anxious and self conscious. I was eating my meal and it felt like it stuck in my throat for a second or two and made me do a kind of inhale sound. I swallowed it but a few minutes later it happened again so that scared me. Since then my swallowing has very quickly got worse to the point where I struggle with both foods and liquids with every single swallow. I chew excessively before building up the courage to swallow and I hold sips of liquid in my mouth before swallowing. I've lost a stone in weight since New Year because my diet has reduced by a lot. Strangely in the morning when I first wake up I can drink quite a few sips of water in one go through a straw but after that it's like a constant struggle all day.
I went to the doctors 2 weeks ago and she's referred me for an endoscopy on the 2 week wait. My appointment is this Thursday and I'm terrified! I only went to the doctors because I wanted to see if there was an omeprazole type medication or an anti anxiety med that dissolves in the mouth (she didn't give me any). I do get quite bad acid reflux quite often and have done for years. Strangely I haven't had it too bad since this swallowing fear started...I noticed on my patient notes on my medical records app that she's written cancer safety netting and on the referral part she's written suspected upper GI cancer. She never even examined me! She even said it could very likely be my anxiety and the endoscopy is just to hopefully reassure me and is something they would send anyone for at my age 47 who was showing certain symptoms....Are they 'normal' things to write on a patients notes? Is it because it's under the 2 week wait?
I did have the same swallowing problem around 14 years ago for quite a while where it was as bad as it is now and I've had it on and off since then but not as bad. It seems to happen when I feel self conscious or have high anxiety. I have had what I believe are osophegual (can't spell it) spasms over the years and I do get pains in my chest and back at times too which feel like reflux or trapped wind.....I don't even know what I'm asking here but has anyone had anything similar. I was reading posts on the OC Facebook page and so many were saying they had hardly any symptoms or that they had difficulty swallowing or acid reflux so that's making me panic even more...When will I learn not to Google!
Sorry for the long message...
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Re: Fear of swallowing/Endoscopy this week
I can sympathise because i have also had swallowing obsessions, and have experienced all the symptoms you describe. I have had an endoscopy to check it out too and the eventual diagnosis was anxiety/hyerawarness. It doesn’t make the symptoms any less real though. You only have to wait a very short time before you have your answer… hang in there xx
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Re: Fear of swallowing/Endoscopy this week
I’m sorry you’re going through this. I’ve had something very similar for the past few months.
First, she puts that on your form so you get seen quickly. It’s because of the swallowing, but it doesn’t mean that’s what she thinks you have, it’s just the only way to get you seen quickly. Which although scary is a good thing.
I don’t want to comment too much on your symptoms because I’m not a dr, but I can tell you what’s happening with me & lots of it is similar to you. Last year I had so much stress, I eventually left my job because of it, it was awful. I also lost a close family member and I think I basically experienced a burn out.
My reflux & heartburn really started to play up in September/October, and then in December I started having some swallowing issues too. It culminated in me going to urgent care just before Christmas because I thought some food was stuck in my throat (it wasn’t). For about 2 weeks after I barely ate. Then I started myself on a liquid diet, and then I read about the acid watcher diet and started to incorporate that. I’ve lost over 2 stone (I needed to), and I’ve spoken to my dr twice, I even asked for an endoscopy but they won’t give me one yet!
For the last few weeks I’ve been feeling so much better. My stress has reduced and I’m starting to relax. In the last week I’ve started to eat more solid foods and they are going down! It’s not perfect, but it’s better. I take omeprazole capsules (smaller & easier to swallow if you do it with water in your mouth) twice a day, and gaviscon advanced after meals and before bed. In 2 weeks I’ll go down to one a day & if my swallow/heartburn gets worse again then I think they’ll refer me for my endoscopy.
Sorry for waffling on, but I wanted you to see the similarities, and how big a part stress plays.
I can really recommend the diet, and following the eating advice. It’s restrictive, but feeling better is the goal here!
I don’t log on very often at all now, but I will keep checking in to see how you’re doing. Please keep talk to us if you want to!
Xx
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Re: Fear of swallowing/Endoscopy this week
Thank you for the replies. It really is a horrible thing to have isn't it. Mind you I find any symptom to be horrible but this swallowing thing is exhausting and scary and makes me feel like I'm 'weird' because I look at other people, even people on the TV and they're throwing food and drink down their necks like it's nothing - I suppose it is nothing though when you haven't got the anxiety and fear and aren't focusing on every swallow.
I've been awake since 5ish this morning with the horrible butterflies and dread feeling. Once again I drank just over a pint of water and it wasn't too bad and then I got up and had a cup of tea which seemed to be ok at first but then it's as if I think 'remember you've got a swallowing fear' and then it's back to the sips and hesitating. I've also had a small bowl of coco pops which took about 15 minutes to eat because of all the chewing and hesitating. It seems to get worse as the day goes on and some meals take a hour now before I finish them or throw the rest away. I'm getting all kinds of symptoms like pains in my chest or back that sometimes seem to move around, gurgling noises, burping, muzzy head and today my throat feels sore. Through the night I've been doing kind of dry swallows that seemed to be involuntary. I suppose a lot of those could be due to not eating and drinking as much but I can't help but fear the worst. The thought of this endoscopy makes me feel like running away to god knows where. I keep having thoughts that they're going to find some kind of cancer and then my mind starts racing at 100mph imagining all sorts of things.
Anyway I'm rambling on again now 🙄 It seems like this swallowing thing is pretty common with anxiety doesn't it. It's nice to know that we're not on our own. I definitely am an hyper aware kind of person and if something makes me feel uncomfortable then I tend to avoid it which would explain the feeling in the restaurant and then this.
Thanks again for your replies xxx
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Re: Fear of swallowing/Endoscopy this week
It’s ok to be scared, it’s completely normal. But, try and do some breathing before you eat so that you start to relax.
With breakfast, if you’re having coco pops, let them go a bit mushy so they’re easier to swallow. Maybe get some spray in your mouth vitamins to make sure you’re still getting some.
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Re: Fear of swallowing/Endoscopy this week
I don't handle being scared very well. My anxiety is through the roof. I even went back to the doctors last week to see a different one and ask if the endoscopy is necessary. He said he's seen people with a swallowing phobia before (phagophobia) and it is caused by anxiety most of the time especially because we're pretty much stopping ourselves from swallowing rather than having problems after the swallow. I do feel like I can feel the food or drink in my chest sometimes but I suppose I'm so tense and hyper aware that I'm noticing or thinking I'm noticing every little sensation. It's just so exhausting. I feel so tired and weak from it and worry that my body is shutting down. I look in the mirror and feel like I look pale and ill. It's just horrendous! I was watching the eating trials on I'm a celeb the other week and was thinking if they can eat a kangaroo ball without having to chew 200 times then surely I can eat my meals but it doesn't make any different. It's as if I've become obsessed with protecting myself from food or drink going down the wrong way. Our bodies are made to protect us so why are we like this.
Everything that I eat now is mushy. I've been chewing a bite of cheese on toast all the way through writing to you.
I'm been having CBT for my anxiety since last June but she's so unreliable and has cancelled so many weeks for either sickness or holiday. I've had 17 sessions in over 30 odd weeks. Her answer to this swallowing problem is to chew 90 times one day then over the next days 80 then 70 etc etc. I felt like saying you've obviously never had this problem because it's not as easy as that. I'm also paying for a therapist every week and I like her a lot but she seems a bit stumped with this issue. I suppose it's one that we've got to work on ourselves...Scary though isn't it!
Thanks for your messages and support ♥️
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Re: Fear of swallowing/Endoscopy this week
I've had acid reflux for years usually worse around ovulation and menstruation for some reason but at other times too. My diet wasn't bad but it could have been better. I'm worrying so much that these years of acid have been causing damage. Strangely since I haven't been able to eat normally I havent had as much acid but I do keep getting the odd pains in my chest like where a bra meets at the front and feeling like I need to burp.
I keep thinking I ate a 3 course meal on Christmas day and was eating quite a lot over Christmas until I felt like my food was going to go down the wrong way on New Years Eve at the restaurant. I did have a big jolt of panic when it happened so it obviously scared me then it's gradually got worse and worse since then.
When I first had this years ago it lasted for quite a long time. It started when I was volunteering at a mental health charity and they ordered some sandwiches in for dinner. It was my first day and everyone went to sit in this really quiet room and I felt really self conscious eating and like the sandwich was hard to swallow then same as now it gradually got worse and worse. I don't know how I coped to be honest. It just seemed to get better very gradually as my confidence grew I think.
Then it happened on and off over the years but didn't stay around for long. Maybe I wasn't as anxious then. It happened again when I went to Rome in 2017. On the plane I felt like I couldnt swallow and while I was there I was just picking at food and sipping the drinks and it lasted for a short time after I came home. I suppose people have different things that affect them when they're anxious but this is such a horrible thing to have isn't it. I don't cope very well with feeling hungry and over the years I have had what I thought were blood sugar drops but when I've checked my glucose levels (I'm not diabetic) they've not been that low. Eating has always helped me in that situation though but now I can't eat quickly enough.
It was my CBT appointment yesterday. She went off the video call after 40 minutes rather than the hour. She was basically saying do I feel like therapy is what I need right now because I haven't done my homework by reducing the chewing. I told her it's not that easy. I felt like saying I don't think this therapy is helping because you're here for a week then off then back then off again and like you say its more about questionnaires and silly questions we already know the answers to. Mine will email me different things over that she probably send to everyone whether they've got similar problems or not.
The therapist who I pay for is very reliable and seems to tailor make things to help me. She's met me at the park a few times to help me with being out and about and the other week she took me to a coffee shop. I could only drink about an inch out of the cup though. It was very busy and I felt self conscious again but I'm still the same with not being able to drink much at home. The therapist asked me if I'd ever heard of vaginismus...Can't believe I said it but I asked her if it was a type of mediation. She laughed and said no then explained that it's to do with the vagina and how some women who have suffered a trauma or have a fear tense up that much that nothing can enter it (TMI sorry!). She said that if it can happen to a vagina then who's to say it can't happen to someone's throat through fear...It makes sense I suppose. This swallowing is very tense isn't it. I grit my teeth together sometimes to swallow or clench my fist. Sometimes my jaws feel like they're so clenched and tight or my temples and head hurt from so much chewing.
Anyway I hope all goes well with your therapist and if she gives some advice then let me know please xx
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Re: Fear of swallowing/Endoscopy this week
Yes we will get better! I think we're just full of anxiety at the moment aren't we and so hyper focused on the swallowing. Plus the medical tests that we've got to have don't help our anxiety levels do they. I've got a blood test tomorrow and then the camera is at 13.50 on Thursday. I can't eat from 7.50 in the morning so that will be hard because even though I struggle I still get hungry and pick at things through the day. Then I'm worrying about how my swallowing will be after the procedure. I think I'm gong to choose the sedation. Will you when you have yours?
Your therapist sounds fantastic and very clued up. I listened to a hypnosis not long ago that was saying about a screen and watching ourselves and rewinding it etc. I can't remember where I heard that hypnosis 🤔 I'll try to find it.
What your boyfriend said makes perfect sense doesn't it. My partner will say to me at times just swallow ffs or how he's sick of this (aren't I??) and how we can't go out for meals etc then other times he's supportive and will say just take your time and it doesn't matter if you don't eat it all but I think we need support all the time with this don't we. I feel like I need to get my anxiety level really low because I'm too tense and aware all the time. I cook a meal and don't think about it much but then when it's time to eat I'm like 🙄 here we go again! I did an easy tea tonight and I had 2 fish fingers, about 7 chips and a few beans. It took me an hour. Do you think the fullness in the throat!/chest is because we're so tense? I wish this feeling in my chest would bugger off because it's making me worry even more.
I haven't choked either (touch wood). I've had where I feel like I stop myself mid swallow and then lean forward quickly or have a jolt of panic but my gag reflex stops the food or liquid from going down then. I suppose we need to trust that our body will do what it's made to do (protect us) but it's just so hard isn't it when we're scared. I feel like I've forgotten how to swallow properly and forgotten how much food and drink a person can safely swallow. It's so weird x
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Re: Fear of swallowing/Endoscopy this week
It must be hard for our partners because their lives are on hold too and because they don't have this problem, and it is a strange one really, they probably can't see why we just can't swallow naturally.
Do you chew and chew and then swallow bits at a time or all in one go? I'm a bit at a time. If I could drink properly I'd probably feel better because then I'd be drinking soups or smoothies and probably wouldn't feel as empty and weak. I drank nearly a pint of water through a straw again when I woke up but then the fear kicks in and I just can't seem to tell myself that I drank the water so I must be able to drink 🤔 I had some cheerios and they weren't too bad but when I tried to drink the milk out of the bowl after I was just holding it in my mouth.
It definitely is a catch 22 and also how we've both got reflux and we both feel like this makes you think it is due to the reflux. I'd imagine, and hope that anything serious with swallowing would be something that happens over quite a long period of time rather than quite suddenly like it has with us. Also it's fear thats preventing us from swallowing isn't it rather than swallowing and it coming can up or not going down. I had a couple of days where I didn't go to the toilet (sorry) but I don't go every day anyway and with not eating as much food then its pretty obvious that we might not poo as much. I went yesterday and it was normal (probably a very healthy one on that chart thing they do) so I thought at least I know the food that I am eating is going through me. Anyway enough about that, sorry!!
I'm nervous about my blood test but I always am with any tests. I've got the NHS app have you so I'll more than likely be checking that constantly from the minute I get home from the blood test this afternoon 🙄 I'm dreading the endoscopy but just want it out of the way now and to be told that everythings ok, or at least nothing to worry about.. Since yesterday I feel a bit scratchy in my throat, heavy headed and my ears feel full so I hope I'm not getting the cold that my started with over the weekend because I'm not sure if I'd have to postpone the test tomorrow then.
The hospital rang me to sort out my appointment a couple of days after I'd been to the doctors so yours shouldn't be too long now xx
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Re: Fear of swallowing/Endoscopy this week
Have you lost much weight since yours started? I've lost a stone since the beginning of January. I did want to lose some weight but not like this. They say about unexplained weight loss don't they but I'd say ours was explained if we're not eating as much
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Re: Fear of swallowing/Endoscopy this week
Oh that's good about the blood test results. That's one worry off your mind. At least they've mentioned the hydration so if you can work on that then the next ones will be normal I'd imagine. Shall you choose sedation for the endo?
My reflux has been a lot better since this swallowing thing started. It was bad over Christmas when I was eating rubbish so I wonder if that bought this on.
I have the same thoughts about if I'll ever be able to eat normally again or go out for a meal etc. I remember when I was recovering from it before and I'd sit in a restaurant but would sit where I wasn't facing anyone then I'd end up putting quite a but of my food on my partners plate. The waiter would be hovering round to take my plate and I was still chewing away.
I snapped at my partner last week because he said well you've eaten your dinner so see it as an achievement. I'd only had 1 round of beans on toast and it took ages. I said yes I've eaten it but i didn't enjoy it then started asking how he'd like it if he was going through this and how tiring and frustrating it is..I suppose I should see it as an achievement but I just want to be able to eat and think 'oh that wasn't too bad, I feel like things are improving'.
I just had a banana and it took me half an hour. I looked at myself on the mirror while I was eating it and I actually looked tense like my lips were pushed together tightly. Now my jaw aches. I don't think bananas are the best texture though are they. It's like chocolate I keep trying to eat that but it seems to make my saliva thick and then I'm sat there thinking I don't feel like I can swallow this but I don't want to get into the habit of spitting things out. Sweets like Skittles do the same
We definitely keep trying don't we so we'll get there!! Xx
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Re: Fear of swallowing/Endoscopy this week
Bananas aren't the best texture I mean
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Re: Fear of swallowing/Endoscopy this week
Thats exactly what it is. We're focusing on it way too much but how do we stop 🤔 Sometimes I'm just sat there like a cow chewing on grass as if I'm chewing just for the sake of it because there's barely anything left on my mouth but at the same time it's as if my throat won't work to let me swallow naturally. Sometimes if I feel food go to the back of my throat before I'm ready I kind of blow it away with my throat and make a kind of quuuu noise..If that makes sense.
Oh bloody hell I don't know what you can have for your meal tonight. It's foods that you can pick at really isn't it rather than a bigger meal where you might feel overwhelmed. How about taking a little tupperware box out with you so you can (hide how much you've left) bring some of the food home.
I've got it in my head that I'll have the sedation. I'm very medication phobic though, that's why I'm not on any anxiety meds but I'm starting to think that I might need to have some soon xx
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Re: Fear of swallowing/Endoscopy this week
Just got back from the blood test. My partner took me and I felt so lightheaded when I got out of the car but plodded on with my jelly legs. I told the woman about the swallowing 🙄 and the first thing she said was is it stress?? I mentioned about the endo and she said her mum had one and they give the results there and then which I had heard anyway. She also said that she's almost always got acid reflux and has done for years because I'm worrying about my years of reflux.
I know what you mean about wanting something substantial. I feel so hungry and thirsty but even that doesn't make me able to wolf anything down. I drove past a man jogging the other day while drinking out of a bottle and I just thought how the hell does he do that..The answer probably is that he wasn''t thinking about it.
I was taking propranolol last year for a few weeks but it made me become obsessed with checking my heart rate and blood pressure which I still do now which doesn't help the anxiety either...We're our own worst enemies at times aren't we. I'm thinking about going on antidepressants when I can swallow them ffs. The doctor prescribed me some sertraline but I read online reviews and saw some saying about side effects so they're still in the pharmacy bag. Surely the side effects can't be as bad as this though.
You're not the only one who feels like they look a funny colour. I feel like my eyes look heavy and my face looks pale. I look stressed, tired and sad. I feel like I've aged 10 years in a few weeks.
Hopefully your meal out won't be as bad as you think it will be. All you can do is try and at least it's only you and your boyfriend and he understands what it's like for you xx
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Re: Fear of swallowing/Endoscopy this week
Your therapist sounds very energetic 😂 I can see how doing all that would help because it's making us focus on doing something, burning off excess energy and making us feel powerful rather than us just looking at our food and dreading it. Was the bread easy to eat? How was your meal out? X
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Re: Fear of swallowing/Endoscopy this week
That's really good that you managed to eat most of the meal. Did you find that you ate quicker when you were out? I chew soup too. I actually really struggle with soup but I do the same and shoot it to the back of my mouth but then sometimes I can feel it hovering in the back of my throat so have a bit of a panic. Being tense and anxious doesn't help at all though does it but its hard not to be when you know how much of a struggle eating a meal can be.
Yes the endo is at 13.50 today so I'm nil by mouth now apart from sips of water. I'm so nervous and I know a lot of people would be but when you suffer with anxiety anyway its just like stress on top of stress isn't it
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Re: Fear of swallowing/Endoscopy this week
Maybe being in an environment where other people were eating helped....Plus the cocktail!🍹You did really well though considering how hard its been lately.
We just need to build our confidence up don't we instead of feeling full of dread and being over cautious. Easier said than done I know.
I get where my teeth, jaws and temples ache sometimes and I've also had a couple of days where I had those tiny ulcer things on the tip of my tongue. I bought some vitamin spray after you suggested it but I haven't used it yet. Going to wait until after this endo.
I'm on pins honestly and have that feeling where your whole body seems to be tingling with nerves. I feel so hungry as well. I had a bowl of cheerios and half a round of toast this morning. I could only eat until 7.50 but there I was at 7.58 still chewing the frigging toast. I can have clear liquids now until 11.50 so I'm sipping on black coffee or water.
Thank you ♥️ xx
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Re: Fear of swallowing/Endoscopy this week
Quote:
Originally Posted by
Roxroxrox
How did yours improve Jojo? X
I cant tell you because i am currently in the middle of a new swallowing obsession. I feel like it hurts a bit when i swallow food and this is frightening me. I had a clear endoscopy about a month ago so i am trying to convince myself they would have spotted throat cancer at that but im still managing to worry. Swallowing obsessions are terrible because you avoid eating and then you lose weight and then that feeds the silly dragon!!!
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Re: Fear of swallowing/Endoscopy this week
Well I've had it done, kind of! I was here for 2 hours before they did it and I had the sedation. But not the throat spray. They couldn't complete the whole thing because I was heaving quite a lot. I'm not sure if they're going to get me to have another one at a later date. I haven't had the report back yet but they have mentioned a hiatus hernia.
I feel a bit woozy now but wanted to let you know how it went x
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Re: Fear of swallowing/Endoscopy this week
Maybe a hiatus hernia explains your symptoms??
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Re: Fear of swallowing/Endoscopy this week
I don't know how I feel. But I wouldn't mind some of this sedation stuff for every day use 😂 I've had so much acid reflux for years and years plus things like spasms on my chest and back where it radiates to the jaw which make me feel like it could be a heart attack. They said that can be caused by a hernia. They only got down to the far end of the oesophagus but she said there's absolutely nothing that could making it hard for me to swallow...Apart from anxiety! I haven't eaten or drank yet. I was hoping they'd give me some tea and biscuits there so I'd at least be at a hospital of something happened but within half an hour I was told they'd rang my partner to pick me up. The sedation they gave me was fentanyl and midazolam.
My partner is saying right you need to get on top of this now because he's sick of it..How the hell does he think it feels for me/us.
She mentioned booking me on for another under general anaesthetic. I did ask of she could just try again today but she said she'd tried twice and I wasn't tolerating it very well. I'm not usually a heaving type of person. I wish I'd had the throat spray now but I was worrying that if I couldnt feel my throat and needed to swallow that I'd choke. There was 4 of them in the room and they were so nice x
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Re: Fear of swallowing/Endoscopy this week
Sorry yes they did say I've got a large hiatus hernia. They've given me leaflets about it but it doesn't tell me much. She got to the part where my oesophagus meets my stomach with the camera. She's going to send a report to my GP aswell so I should be able to read about that on my NHS app. My blood tests are back and all are normal apart from one called mean corpucs haemoglobin which was 0.5 higher than it should be. I've googled and it's something to do with anaemia/B12 or folic acid from what I can see. No surprise really with how little I've been eating.
I'm hoping it sinks in now that my throat is fine and that there's nothing to signal a swallowing problem but fears don't go overnight do they xx
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Re: Fear of swallowing/Endoscopy this week
It’s great your endoscopy was clear - apart from the hernia. They can definitely cause reflux.
Have you tried distracting yourself when you eat? I watch tv or play on the pc which I find really help.
You girls are doing great xx
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Re: Fear of swallowing/Endoscopy this week
Hi Scass and thank you ☺ It's a relief thats for sure because my mind has been thinking all sorts. I must admit a part of me is thinking I wish she'd have been able to do the whole endoscopy because what if she missed something but that's my anxiety talking isn't it. As soon as I got home I started googling hernia 🙄 It doesn't seem to be a major thing though and maybe now I know that I've got one I can make some lifestyle changes and at least when I get the wicked heartburn now I'll know why.
Yes I do try to distract myself when I'm eating but it still takes sooo long to eat at the moment. We'll get there though won't we. We all seem to be very determined to sort this problem out ♥ xx
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Re: Fear of swallowing/Endoscopy this week
Yes we’ll get through, we have a little self help thread here!
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Re: Fear of swallowing/Endoscopy this week
Not really Rox. I still feel really hesitant but I keep trying to tell myself that I'm fine. Hopefully things will get easier though as it starts to sink in that she didn't see anything that would stop me from swallowing xx
Yes we do Scass 😂 Its good to have others who understand isn't it xx
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Re: Fear of swallowing/Endoscopy this week
You’ll get there. Your anxiety has been so bad that it needs to go down a bit too.
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Re: Fear of swallowing/Endoscopy this week
That's very true! My anxiety has been horrendous over the last year. I've always had anxiety off and on but last year I fell and one hospital said I'd broken my ankle and another said I'd torn ligaments but whatever it was I had to have 6 weeks off work and because I couldn't really do much my anxiety soared and I haven't been able to get on top of it at all. I struggle to go out but I make sure I go somewhere every day and now this swallowing thing 🙄
I always think if I could just have a few days where I didn't feel anxious then I could really start to focus on getting better. Being hyperaware of every symptom and sensation doesn't help though does it
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Re: Fear of swallowing/Endoscopy this week
That must have been really tough with your ankle. I know what you mean, you just sort of slip into a low mood/anxiety.
Going out once a day is great. I do the school run twice a day & supermarket once it’ll twice a week which all helps. I’ve started a couple of new hobbies recently too which I’m really enjoying.
There’s no time like the present though. The anxiety won’t go just because we want it to, we have to help it along.
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Re: Fear of swallowing/Endoscopy this week
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Re: Fear of swallowing/Endoscopy this week
Oops pressed send too soon!
Yes we definitely have to help things along. I feel like I've got stuck in a rut lately. Before Christmas I was doing 'ok'. I was going to the supermarket on my own and felt more comfortable driving. I was going to the pub and for meals and then over Christmas my partner was off for 3 weeks and sitting up till 2am with the telly blaring so I want getting a very good sleep and the next day I felt knackered and like I couldnt be arsed to do anything. My partner isn't very motivating so that made me feel even more lazy. Then the next thing it was new years eve and I was in the busy restaurant feeling tense and on high alert and struggling to eat. The week before I'd eaten my Christmas dinner no problem so it must be anxiety.
Rox your therapist sounds bloody brilliant. Can we come for lunch too 😂 It really does seem like he knows sooo much about it and so much of what you said I can really relate to
Googling and forums aren't the best thing for us to do are they. Loads of people have symptoms and medical tests but they just go with the flow don't they rather than have to analyse and research everything. I've been terrible with googling lately especially over the endoscopy and now hiatus hernias ffs. The endoscopy nurse rang me this morning and I've got to have another one done because she wasn't able to complete it last week because I was heaving. She said this time we'll try a nasal one so my anxiety has been sky high all day. She also mentioned a CT scan because I mentioned last week that I'd lost a stone in weight since the beginning of January. I'd say with me not eating as much then it's pretty obvious that I'd lose weight. I think she could tell I wasnt too keen so she said let's just do the nasal endoscopy and go from there. She mentioned a barium swallow but I told her that no way would I be able to swallow the barium. I asked her if she was concerned and she said she saw no narrowing or blockages in my osophegus (however it's spelt) and she said its very unlikely to be anything sinister. She told me not to worry but that's so much easier said than done isn't it.
My swallowing hasn't been very good today but having all of this on my mind isn't going to help matters is it. I did to drink half a pint of water quite normally this morning but then that 'don't forget you' ve got a swallowing phobia' voice seemed to pop up again 🙄 xx
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Re: Fear of swallowing/Endoscopy this week
If you're anything like me then I seem to get too used to things. When I was working I was out at 6am till around 2 I'd come home and either have a nap, watch telly or clean round. I'd cook tea then walk the dog then have a bath and then it'd be tv, chill and bed. On my days off I'd do the food shop, cleaning, relaxing but then I did my ankle last Feb and it was like one extreme to another where I felt trapped and at a loose end and like I didn't want to do anything. I think I'm the sort of person who needs routine but that went out of the window a year ago now and it's a struggle to get back on track.
I also think I'm the sort of person now who needs someone to motivate me...And look after me I suppose.
I know what you mean about the jump when you wake up. It's horrible!! Our partners seem quite similar too. Mine is quite inconsiderate and is so noisy and banging about when he comes to bed. On the rare time that he goes to bed first I'm tiptoeing into the bedroom so I don't wake him up. Sleep is really important to us isn't it because it helps to switch our minds off for a bit.
It is good that they're offering me the tests but the stress is horrendous. I've never been good with things like this. She said today that I might have to be referred to ENT to help the swallowing. She also said about anxiety meds but I just don't know what to do about that. The sedation I had last week made me feel quite calm so I wouldn't mind some of that to take on the high anxiety days 😂
I had my video call CBT today. I don't think I've ever felt better afterwards though. My homework for this week is horrendous. I've got to write a story about my eating issues and then make it into the worst case scenario (I don't even want to say it) then I've got to read it over and over for 30 minutes a day. She said she doesn't know what else to try because I don't seem to be improving with what she's said already which was the reducing the chews by 10 each day 🙄 I don't think she's got a clue. I actually said to her that this phobia is a bit different to say someone who's scared of water where they'd stand by a pool then put their feet in and then get into the water. I said they can get out if they feel uncomfortable or not go near to the water at all but with this one we need to eat and drink. Her answer was she doesn't see how it's any different because a phobia is a phobia 🤔 I was thinking of stopping seeing her weeks ago and I wish I had now. The therapist I pay for is so much better but even she seems stumped with this swallowing issue. I know we have to do it for ourself but we also need some guidance, support and understanding don't we.
I'm exactly the same about being home alone. I had coco pops this morning and then some of those little crackers, ham and cheese (are they dairylea) for my dinner. Tiny sips of drinks through the day. I know I'm so so tense but I find it so hard to relax. I feel hungry most of the time do you? I asked my partner for some tea ideas for the week because I'm ordering a food shop tomorrow. He said Gammon? Lamb chops? 🙄 He also said you just need to say enoughs enough now and just eat 🙄 It took me an hour to eat a corned beef salad sandwich last night with the crusts cut off...xx
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Re: Fear of swallowing/Endoscopy this week
Good Morning! I got up early today because I decided to pick my daughter and grandson up (I'm a youngish Nan, I'm 47) to save her walking him to nursery and then to work. The apprehension I feel before going anywhere is ridiculous. I had my glass of water on waking which wasn't too bad apart from some hesitation and then I made a cup of tea and some toast and honey (1 and a half rounds with the crusts off - The dog had the other half with his poached egg). I went into the living room and put Eastenders on...Trying to act 'normal' sat down and it was sip sip sip AGAIN, holding the tea in my mouth and pushing it around a bit until all is left is bubbly saliva then wondering what do I do with it. I ate the toast before Eastenders had finished and then I got ready and went out. I felt full of adrenaline and my ears felt muffled and my head felt tight and the feelings of dread...I'm so sick of it and just wish something would shift so it felt easier. When the traffic lights turned red I sat there counting to try and distract myself from my anxiety and when I saw a line of traffic I was inwardly thinking OH MY GOD!!!!. I dropped them both off and then when I was nearer to home I drove round the streets by me just to stay out for longer. I saw a man walking his dog while eating a banana and at the moment it confuses me now how people can do it..I thought bloody hell he could go on Britains got talent! I'm obsessed with seeing people eating or drinking. Its like on Eastenders I watch that Linda knocking back the drinks and think how does she do that???!! I watch people chewing and count how many times they do it. Its really taking over everything so no wonder I'm struggling.
Yes I've seen that CBT is supposed to be good for this. I just think I've ended up with a therapist who is very basic and doesn't tailor make things to suit me. I agree 100% about how writing out a worse case scenario thing doesn't sound very helpful. I want and need less anxiety, not more!
It sounds like you're doing really well Rox. We have got to push ourselves haven't we but this one is such a difficult and scary phobia. Another phobia of mine is rats and I think it'd be so much easier to deal with that one. Are you completely ok with drinking? Like can you just drink a glass of something with no hesitation? I wish I could because I always used to have a drink with me but now I have coffee, water and some berry huel here and I just keep sipping them through the day but thinking about every swallow.
I'm in Stoke-on-Trent, where are you?? it would be so nice to meet up wouldn't it. Nobody understands this unless they've had it themselves. I can't even say that I've got friends any more. I think when you decline invitations or distance yourself from people then they stop bothering don't they....Maybe they weren't proper friends in the first place.
I've just done the food shop online. Its bloody annoying when we see all these foods and drinks but then realise that we struggle to eat them ffs x
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Re: Fear of swallowing/Endoscopy this week
Thank you. I find it hard to praise myself up or see things as an achievement when I don't enjoy it. If I felt fine this morning then I'd maybe feel like I'd turned a corner but it's as if I do everything with gritted teeth and then think thank god for that afterwards. I know I need to do more and try harder but when it doesn't seem to get any easier I just think why keep putting myself through all this, but at the same time I'll be at home and telling myself you need to do something. I put way too much pressure on my self. Yes I see what you mean about us being stronger than others. Every day is a challenge for us isn't it but we try our best to face up to the challenges.
I think I usually eat my breakfast in that amount of time. Like cereal or toast. I think a fry up would take 2 hours 😂
Reflux is vile isn't it. Have you suffered with it for long? I've had it for years and for some strange reason it gets worse around ovulation and menstruation...Have I said that before? It doesn't take much to trigger it off. I definitely say the tomato sauce in the pasta could trigger it. So can anxiety and also with all of this chewing are we swallowing air or creating more acid?? I find that the pains move around so it can feel like it's in my throat, chest, back, stomach...Horrible!!
I've just had a packet of those mini chocolate fingers, like the size a child would take to school and they were hard work. I think there was 8 and I ate the first couple ok but then I felt like I'd got too much saliva and I think chocolate makes it thicker doesnt it so I was just sat here with my mouth full trying to swallow a bit at a time...Its got to be nerves and anxiety hasn't it to be like this rather than a physical thing? I've also noticed when I swallow sometimes that I lift my right leg up or put my hand a couple of inches away from my mouth 🤷*♀️
Hopefully the doctor will be able to give you some support. Let me know what they say please. I wish there was a medication that just took the edge off and calmed us down but they don't prescribe things like that anymore do they. It always seems to be propranolol or antidepressants. Yes I saw on my leaflets about not having the omeprazole type things 2 weeks before the endoscopy. Did you say yours is the 28th?
Is Banbury near Northampton? I think my cousin moved to there.
Oh I was the same with food. Always picking and never wanted to leave any of my meal. Facebook memories keep coming up and I see these meals and desserts and drinks that I had and places that I'd been to and I think how have things got like this now. Then I try to tell myself that I've been like this before all of those memories so I can do it again.
This is my first bottle of huel too. I didn't expect it to be as thick as it is and I chewed mine too then sat holding it in my mouth. I think back to all of the people who I used to go to at work. I don't know if I've said this before but I was a community carer so saw all kinds of people with different health issues or disabilities and they could all swallow. One woman who was 100 would be lying in bed and she'd put about 10 tablets in her mouth, take a mouthful of water and swallow the lot 😳 Another man with motor neurone couldn't move a muscle on his own but could eat fish and chips and drink gallons of tea. He just needed us to feed them to him.
I was just thinking I'm sure I wrote a post on here when I had it before but it was a different username. I wonder if I can find it 🤔 xx
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Re: Fear of swallowing/Endoscopy this week
I don't know what those emoji as are all about on my last post 😂 🤔 Have you weighed yourself lately? I think you said 5lbs when we last mentioned it. Mines a stone since the new year and I don't like how the nurse was all you need a CT scan because of the significant weight loss. Surely if we're eating less we'll lose weight. People who are dieting lose weight in a short space of time especially at the beginning don't they. Its not as if we're losing weight but still eating how we did before.
When you say sat in your throat do you mean before you swallow or after? I get where I feel like it's gone down in to my throat but I haven't swallowed yet so then I either have to make a quuuu noise with my throat to push it out or try and swallow it quick. I've noticed I'm burping more but I think we must be swallowing alot of air while we're like this. I'm trying to eat a jacket potato but I feel so tense. I must swallow mushy food less than the size of a 1 pence piece so nobody can choke on that surely...Or the liquids! I think we've just go to try and go for it haven't we but it's so so so hard. I was expecting a drink and biscuits after my endoscopy and I wanted to see if I was any different in a hospital but they didn't give me anything...Typical!
I wonder if the hand to mouth is a nervous reaction or something. I also get a jolt of panic sometimes if I feel like I've swallowed something before I was ready. Like the feeling you'd get as a kid of you swallowed some chewing gum...I have actually read to chew gum with this because it'll make us keep swallowing our saliva. It's also meant to help reflux apparently. I bought some gaviscon double action yesterday because I read that's what doctors usually recommend at first for hernias because they coat the stomach more than other antacids do.
I've never really been a super quick eater and I was the sort who if the taxi came on a night out I couldn't neck my drink and I'm crap at doing shots 😂 I've always been a bit aware of swallowing. When I lived at home we'd sit round the table and if someone coughed my dad would jump up and shout are you alright so I'm thinking he had anxiety about it too. I never gave my kids boiled sweets or things like that.
It's horrible that we're going through all of this. The pains could be reflux, tension, anxiety, even from all this frigging chewing. I've realised as well that I have to be sitting upright to eat and drink. It seems ages since I was leaning back on the settee with my feet up while stuffing my face and maybe even talking to my partner or on the phone.
I remember when I had this years ago I'd watch come dine with me sometimes when I was trying to eat and I'd think how can they eat, drink, talk and laugh all at the same time.
Has the doctor been in touch? Xx
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Re: Fear of swallowing/Endoscopy this week
I read these anxiety books by Dr Claire Weekes, have you heard of her. She wrote them on the 60s and 70s but she knew so much about anxiety. She says in one not to weigh yourself because as soon as you start feeling better the weight will come back on. It just seems pretty obvious that if we used to eat double or more what were eating now then we're going to lose weight aren't we. Maybe we shouldn't worry about that part of it.
Have you decided if you'll have the sedation? I didn't feel like it did much for me but saying that I can't remember going from the endoscopy room back to the bay where I had to stay for a while and I did feel quite calm for the rest of the day. I know that the next day I said to my partner that I felt like I could still feel the tube in my chest. I am very very hyper aware though to the point where I think it's my mind rather than reality. I didn't have a sore throat or cramping pains like they say people can have afterwards due to the tube and the gas they pump in. Is your appointment in the morning or afternoon? I went in there at 13.45 they called me straight through then a nurse took my blood pressure then sent me to a bay. Then another nurse came in to put the cannula in and I was sat there for a while. I didn't even have to wear a gown. At about 3 they took me to another room where I met the nurse who was doing the endoscopy so I'd say I had it done at around half 3 even though my appointment was was 13.50. Then back to the bay and another nurse came and gave me the report and it seemed like minutes later when she told me she'd rung my partner to pick me up. She never mentioned reflux but I suppose that would be in my stomach maybe which they didn't see. She said she couldn't see any blockages or narrowing just that hernia. She also said there was nothing to suggest why I should have problems with swallowing but on the phone yesterday she was saying about all these different tests to find out what's going on. She did say about how anxiety could be a cause too. The only medications she's mentioned is anxiety medication... I'm absolutely crap with anything like this (medical stuff) and tend to fall to pieces and can't think about much else. I'm not brave at all where tests are concerned.
I was going to say I wish someone would scrub my brain in the last message. Just to get rid of these fears. It seems like we feel very much the same.
The incident with the sweet is enough to cause this swallowing issue especially if your anxiety was high already. It's the same as if we panic somewhere and then avoid that place. This problem of ours is hard to avoid though isn't it. X
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Re: Fear of swallowing/Endoscopy this week
God knows why but I've just bought a 3 minute egg timer from Amazon, like the ones with the sand in. My idea is that I can use it when I eat and practice being able to swallow before the sand runs out...Am I going mad?! X
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Re: Fear of swallowing/Endoscopy this week
I feel like the only books I read or listen to are anxiety ones. It really can take over our lives can't it. I think maybe we're just always looking for ways and answers to how we can get better but are we going about it all the wrong way? Non anxious people have aches, pains, sensations, thoughts and things going down the wiring way when they eat/drink but they seem to just dismiss it or carry on as normal. We have to overanalyse and research everything which probably just keeps it going doesn't it. We definitely are stuck in a rut that's for sure.
It's horrible when you have a good day and think you're turning a corner but then it seems to come back and slap you in the face. Don't let today get you down too much. I know it's hard and frustrating and deflating but somethings got to get better soon surely.
Will it be the same doctor on Thursday who referred you for the endo? You sound so much like me because I went to the doctors a few days before crying and asking if I needed the endo. He even wrote on my notes that I was terrified of the endoscopy. He prescribed me sertraline but I wouldn't be able to swallow one.
Are you on your own for most of the day? My partner has been out since 7.30 this morning and isn't home yet. It's horrible being on your own with your thoughts all day especially when we have this swallowing thing going on too. I feel like I need looking after for a few weeks do you? X
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Re: Fear of swallowing/Endoscopy this week
Sigh. It’s horrible isn’t it. I am avoiding eating and i love eating. It sucks
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Re: Fear of swallowing/Endoscopy this week
I could have written that. This phobia has got to be one of the most exhausting and baffling ones that there is. It's taking so much away from us isn't it and it's affecting our partners too. I want a social life and a relationship not to feel like I'm some kind of burden or a chore.
Its embarrassing and so frustrating sitting here chewing away 50 minutes after he's finished his meal which was 3 times the size of mine. I had a quarter of a gammon steak, 5 chips, some peas and an egg tonight...I ate the chips and peas and half of the egg which took me the hour that The Chase was on. I've cut a bit of the gammon off and have been chewing it for 5 frigging minutes. I had a banging headache when I sent the last message to you. I'm sure I must be dehydrated but all I can do is sip ffs...Wtf is this phobia!!! 😡
It's in my head all the time too Rox 😔 I'll get a drink or some food and go and sit in the living room and put my programs on - Trying to be 'normal' but it's like an act where I'm pretending not to think about it but I know I am... If that makes sense. Then it's just a struggle and I don't enjoy anything.
Like you, I've struggled with this anxiety shit for years and it's about time we got a break from it isnt it.
Did you worry as a child? I sound like a bloody therapist now 🙄 I was a worrier. I was very inquisitive and knew too much about different things. I'd say I was quite clingy towards my parents. I remember I used to say I had tummy ache a lot but I think it was anxiety butterflies. I absolutely hated that Sunday night feeling before school. I used to love visiting my grandparents and other family members because I think it made me feel safe and cosy and looked after. I think I'm still that little girl now who wants to feel safe, cosy and looked after 😔 xx